Indigenous Peoples’ perspectives of living with chronic kidney disease: systematic review of qualitative studies
Authors: Marianne Kerr, Nicole Evangelidis, Penelope Abbott, Jonathan C. Craig, Michelle Dickson, Nicole Scholes-Robertson, Victoria Sinka, Rahim T. Vastani, Katherine Widders, Jacqueline H. Stephens, Allison Jaure
Journal: Kidney International (2022)

Indigenous Peoples are defined as those who first lived in a region and have distinct cultural traditions, knowledge, and language that provide a basis for positive self-image and healthy identity.1United Nations Declaration on the Rights of Indigenous Peoples.https://www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdfDate accessed: February 23, 2022Google Scholar Indigenous Peoples have retained much of their cultural identity and displayed remarkable resilience in managing health using holistic approaches,2King M. Smith A. Gracey M. Indigenous health part 2: the underlying causes of the health gap.Lancet. 2009; 374: 76-85Abstract Full Text Full Text PDF PubMed Scopus (893) Google Scholar despite being dispossessed of their lands through ongoing colonization that threatens their livelihoods and cultures.3Stephens C. Nettleton C. Porter J. et al.Indigenous peoples' health—why are they behind everyone, everywhere?.Lancet. 2005; 366: 10-13Abstract Full Text Full Text PDF PubMed Scopus (150) Google Scholar Indigenous Peoples are challenged by low health literacy, poor access to health care, lack of cultural safety in mainstream health services, and systemic racism and cultural misunderstanding.2King M. Smith A. Gracey M. Indigenous health part 2: the underlying causes of the health gap.Lancet. 2009; 374: 76-85Abstract Full Text Full Text PDF PubMed Scopus (893) Google Scholar Consequently, Indigenous Peoples health is adversely affected, with the prevalence of noncommunicable diseases increasing.4Gracey M. King M. Indigenous health part 1: determinants and disease patterns.Lancet. 2009; 374: 65-75Abstract Full Text Full Text PDF PubMed Scopus (840) Google Scholar, 5Australian Institute of Health and WelfareAustralian Burden of Disease Study: Impact and Causes of Illness and Death in Aboriginal and Torres Strait Islander People 2011. Australian Institute of Health and Welfare, 2016Google Scholar, 6World Health OrganizationWorld Health Statistics 2019: Monitoring Health for the SDGs: Sustainable Development Goals. World Health Organisation, 2019Google Scholar The high burden of chronic disease among Indigenous Peoples is widely recognized, in particular, the high incidence of hypertension and diabetes which increases the risk of developing kidney disease.7Thomas D.A. Huang A. McCarron M.C.E. et al.A retrospective study of chronic kidney disease burden in Saskatchewan's First Nations People.Can J Kidney Health Dis. 2018; 5: 1-13Crossref Scopus (12) Google Scholar, 8Yeates K.E. Tonelli M. Chronic kidney disease among Aboriginal people living in Canada.Clin Nephrol. 2011; 74: S57-S60Google Scholar, 9Dyck R.F. Naqshbandi Hayward M. Harris S.B. Prevalence, determinants and co-morbidities of chronic kidney disease among First Nations adults with diabetes: results from the CIRCLE study.BMC Nephrol. 2012; 13: 57Crossref PubMed Scopus (25) Google Scholar, 10Jha V. Garcia Garcia G. Iseki K. et al.Chronic kidney disease: global dimension and perspectives.Lancet. 2013; 382: 260-272Abstract Full Text Full Text PDF PubMed Scopus (2748) Google Scholar For Australian Indigenous Peoples, chronic kidney disease (CKD; defined as glomerular filtration rate <60 ml/min per 1.73 m2), occurs younger, progresses more quickly to kidney failure requiring kidney replacement therapy, and has a mortality rate at least 7 times higher than in the non-Indigenous population.11Cass A. Snelling P. Brown A. Preventing chronic disease to close the gap in life expectancy for Indigenous Australians. Sydney University Press, 2012https://ses.library.usyd.edu.au/handle/2123/12571Date accessed: July 29, 2021Google Scholar,12Zhao Y. Dempsey K. Causes of inequality in life expectancy between Indigenous and non-Indigenous people in the Northern Territory, 1981–2000: a decomposition analysis.Med J Aust. 2006; 184: 490-494Crossref PubMed Scopus (72) Google Scholar For many Indigenous Peoples, access to quality health care is difficult and treatment options such as transplantation are limited.8Yeates K.E. Tonelli M. Chronic kidney disease among Aboriginal people living in Canada.Clin Nephrol. 2011; 74: S57-S60Google Scholar Fear of engaging inappropriate Western health services drives this along with concerns about leaving their homeland, cultural roots, and community for treatment in centralized locations.2King M. Smith A. Gracey M. Indigenous health part 2: the underlying causes of the health gap.Lancet. 2009; 374: 76-85Abstract Full Text Full Text PDF PubMed Scopus (893) Google Scholar Many Indigenous Peoples with CKD experience similar challenges to the general population; however, uniquely they may encounter inequitable access to responsive, culturally safe health information and services.13Hughes J. Dembski L. Kerrigan V. et al.Gathering perspectives – finding solutions for chronic and end stage kidney disease: Indigenous patient voices – 2017 Symposium Report.Nephrology. 2018; 23: 5-13Crossref PubMed Scopus (16) Google Scholar A thematic synthesis of available qualitative research on the experience, impact, and challenges of CKD among Indigenous Peoples, globally, can broaden our understanding across different First Nations groups and settings. The aim of this study was to describe global perspectives of Indigenous Peoples experience of living with CKD. We followed the Enhancing Transparency of Reporting the Synthesis of Qualitative Research framework.14Tong A. Flemming K. McInnes E. et al.Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.BMC Med Res Methodol. 2012; 12: 181Crossref PubMed Scopus (1627) Google Scholar Ethical approval was not required because the study results are available in the public domain. Qualitative studies that described the experiences and perspectives of Indigenous Peoples, aged ≥18 years, with CKD were eligible. Participants with any stage of kidney disease (including those receiving kidney replacement therapy) were eligible as they may have reflected on their experience of CKD before requiring kidney replacement therapy. Studies were excluded if they did not focus on the target population, used structured surveys, or were epidemiologic studies, editorials, or reviews. Non-English studies were excluded because of a lack of resources for translation and limited feasibility in understanding and synthesizing cultural and linguistic nuances, potentially leading to misinterpretation of the study results. The search strategy is provided in Supplementary Figure S1. Searches were conducted in MEDLINE, Embase, PsycINFO, and CINAHL from database inception to October 7, 2021. We also searched Google Scholar, PubMed, and reference lists of articles and reviews. Search results were collated in EndNote X9 and Covidence systematic review software (Veritas Health Innovation; www.covidence.org), where titles and abstracts were screened by MK and NE. Articles not meeting the inclusion criteria were excluded. Full texts of potential articles were assessed for eligibility by MK, NE, and VS, a researcher of Australian Aboriginal descent, to identify those for inclusion. Details of the included studies were extracted into Excel by VS, to enable multiple authors to record their evaluation of study quality. The comprehensiveness of reporting of each study was assessed independently by 5 authors (NE, VS, MK, TV, and NS-R) using the Consolidated Criteria for Reporting Qualitative Health Research framework,15Tong A. Sainsbury P. Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.Int J Qual Health Care. 2007; 19: 349-357Crossref PubMed Scopus (15459) Google Scholar which includes criteria specific to research team, study methods, study context, and method of analysis and interpretation. We also used the CONSolIDated critERia, the CONSIDER statement,16Huria T. Palmer S.C. Pitama S. et al.Consolidated criteria for strengthening reporting of health research involving indigenous peoples: the CONSIDER statement.BMC Med Res Methodol. 2019; 19: 173Crossref PubMed Scopus (144) Google Scholar for strengthening the reporting of health research involving Indigenous Peoples to assess how well Indigenous preferences and priorities were addressed when the research was conducted. The CONSIDER checklist, comprising 17 criteria within 8 research domains, was used by the same authors for independent review. Any differences were discussed until consensus was reached. Thematic synthesis17Thomas J. Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews.BMC Med Res Methodol. 2008; 8: 45Crossref PubMed Scopus (3881) Google Scholar was used to analyze the data through an iterative process involving familiarization with the data, coding, generating themes, and defining the scope and focus on each theme and subtheme. All participant quotations and text under the Results or Discussion/Conclusion sections were entered into HyperRESEARCH, version 4.0.3 (ResearchWare Inc), for data management. Author NE conducted line-by-line coding and inductively identified experiences and perspectives of Indigenous Peoples with CKD, grouping concepts into themes and subthemes. These were reviewed and discussed at length by NE, VS, MK, and NS-R, to challenge personal assumptions, ensure the analytical framework reflected the full range and depth of the data, and identify conceptual links to generate a thematic schema. From 1895 articles retrieved, 12 studies met the inclusion criteria (Figure 1), with a cohort of 201 Indigenous participants from 4 high-income countries: United States, Canada, Australia, and New Zealand. Within this cohort, 47 participants (23%) had CKD not requiring kidney replacement therapy. Most included studies were conducted with Indigenous groups living in rural and remote settings, with only 2 studies including people living in urban centers. Study characteristics are detailed in Table 1.18Bennett E. Manderson L. Kelly B. Hardie I. Cultural factors in dialysis and renal transplantation among Aborigines and Torres Strait Islanders in North Queensland.Aust J Public Health. 1995; 19: 610-615Crossref PubMed Scopus (23) Google Scholar, 19Cass A. Lowell A. Christie M. et al.Sharing the true stories: improving communication between Aboriginal patients and healthcare workers.Med J Aust. 2002; 176: 466-470Crossref PubMed Scopus (220) Google Scholar, 20Hughes J.T. Freeman N. Beaton B. et al.My experiences with kidney care: a qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.PLoS One. 2019; 14e0225722Crossref Scopus (13) Google Scholar, 21Jones M.A. Cornwall J. "It's hard to ask": examining the factors influencing decision-making among end-stage renal disease patients considering approaching family and friends for a kidney.N Z Med J. 2018; 131: 10-19PubMed Google Scholar, 22Keddis M. Finnie D. Kim W (Sunny) Native American patients' perception and attitude about kidney transplant: a qualitative assessment of patients presenting for kidney transplant evaluation.BMJ Open. 2019; 9e024671Crossref PubMed Scopus (10) Google Scholar, 23Richels L. Sutherland W. Prettyshield K. et al.Community-based dialysis in Saskatchewan First Nations: a grassroots approach to gaining insight and perspective from First Nations patients with chronic kidney disease.Can J Kidney Health Dis. 2020; 72054358120914689https://doi.org/10.1177/2054358120914689Crossref PubMed Scopus (6) Google Scholar, 24Rix E.F. Barclay L. Stirling J. et al.The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.Hemodial Int Int Symp Home Hemodial. 2015; 19: 80-89Crossref PubMed Scopus (24) Google Scholar, 25Schiff R. Freill H. Hardy C.N. Understanding barriers to implementing and managing therapeutic diets for people living with chronic kidney disease in remote Indigenous communities.Curr Dev Nutr. 2020; 5: nzaa175Crossref PubMed Scopus (2) Google Scholar, 26Sinclair C. Stokes A. Jeffries-Stokes C. Daly J. Positive community responses to an arts-health program designed to tackle diabetes and kidney disease in remote Aboriginal communities in Australia: a qualitative study.Aust N Z J Public Health. 2016; 40: 307-312Crossref PubMed Scopus (10) Google Scholar, 27Walker R.C. Walker S. Morton R.L. et al.Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study.BMJ Open. 2017; 7e013829Crossref Scopus (36) Google Scholar, 28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar, 29Smith M. Weaving the sweetgrass and porcupine quill birch box into a methodology: the living stories of chronic kidney disease for First Nations People.https://dspace.library.uvic.ca/handle/1828/9308Date accessed: July 13, 2021Google Scholar The transparency of reporting was variable, as demonstrated in Supplementary Table S1. The critical appraisal is available in Supplementary Table S2.Table 1Characteristics of included studiesStudy detailsCountryNo. of Indigenous participantsIndigenous nationalityCKD stageSex, M/F ratioAge range, yrMethodological frameworkData collectionAnalysis methodTopicCKDDialysisTxDKDBennett et al.,18Bennett E. Manderson L. Kelly B. Hardie I. Cultural factors in dialysis and renal transplantation among Aborigines and Torres Strait Islanders in North Queensland.Aust J Public Health. 1995; 19: 610-615Crossref PubMed Scopus (23) Google Scholar 1995Australia11Aboriginal Australian00110NSNSExploratory qualitativeIn-depth interviewsNSSocial and cultural factors affecting patients' experience of dialysis and transplantationCass et al.,19Cass A. Lowell A. Christie M. et al.Sharing the true stories: improving communication between Aboriginal patients and healthcare workers.Med J Aust. 2002; 176: 466-470Crossref PubMed Scopus (220) Google Scholar 2002Australia2Aboriginal Australian11001:124–50Grounded theorySemistructured interviewThematic analysisPerceptions of the effectiveness of communication with health care workersHughes et al.,20Hughes J.T. Freeman N. Beaton B. et al.My experiences with kidney care: a qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.PLoS One. 2019; 14e0225722Crossref Scopus (13) Google Scholar 2019Australia26Aboriginal Australian11131010:1629–83PhenomenologyInterviewThematic analysisExperiences of kidney careJones and Cornwall,21Jones M.A. Cornwall J. "It's hard to ask": examining the factors influencing decision-making among end-stage renal disease patients considering approaching family and friends for a kidney.N Z Med J. 2018; 131: 10-19PubMed Google Scholar 2018New Zealand9Maori5100010:523–68NSInterviewThematic analysisFactors influencing decision-making around transplantKeddis et al.,22Keddis M. Finnie D. Kim W (Sunny) Native American patients' perception and attitude about kidney transplant: a qualitative assessment of patients presenting for kidney transplant evaluation.BMJ Open. 2019; 9e024671Crossref PubMed Scopus (10) Google Scholar 2019United States12Native American07097:542–58Grounded theorySemistructured interviewInductive thematic analysisPerceptions and attitudes about kidney transplantRichels et al.,23Richels L. Sutherland W. Prettyshield K. et al.Community-based dialysis in Saskatchewan First Nations: a grassroots approach to gaining insight and perspective from First Nations patients with chronic kidney disease.Can J Kidney Health Dis. 2020; 72054358120914689https://doi.org/10.1177/2054358120914689Crossref PubMed Scopus (6) Google Scholar 2020Canada28Ministikwan, Muskowekwan, Waterhen, and Canoe Lake21700NSNSGrounded theorySharing circles and interviewsThematic analysisPatient experiences with kidney disease services and views on home dialysisRix et al.,24Rix E.F. Barclay L. Stirling J. et al.The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.Hemodial Int Int Symp Home Hemodial. 2015; 19: 80-89Crossref PubMed Scopus (24) Google Scholar 2015Australia18Aboriginal Australian018009:935–78Grounded theoryIn-depth interviewsThematic analysisDescribes Aboriginal patients' perspectives and experiences of kidney servicesSchiff et al.,25Schiff R. Freill H. Hardy C.N. Understanding barriers to implementing and managing therapeutic diets for people living with chronic kidney disease in remote Indigenous communities.Curr Dev Nutr. 2020; 5: nzaa175Crossref PubMed Scopus (2) Google Scholar 2020Canada36NSNSNSNSNS17:1918–79NSSemistructured interviewsThematic analysisPatients' perspectives on food access barriers for remote First Nations persons living with CKDSinclair et al.,26Sinclair C. Stokes A. Jeffries-Stokes C. Daly J. Positive community responses to an arts-health program designed to tackle diabetes and kidney disease in remote Aboriginal communities in Australia: a qualitative study.Aust N Z J Public Health. 2016; 40: 307-312Crossref PubMed Scopus (10) Google Scholar 2016Australia26Aboriginal Australian2000NSNSNSYarning approachNSResponse to an arts-health programWalker et al.,27Walker R.C. Walker S. Morton R.L. et al.Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study.BMJ Open. 2017; 7e013829Crossref Scopus (36) Google Scholar 2017New Zealand13Maori5800NS22–72Grounded theorySemistructured interviewThematic analysisExperiences and perspectives of CKDDeGroot,28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar 2016 (thesis)United States10Menominee Native American010003:730–80Descriptive phenomenologySemistructured interviewThematic analysisExperiences of living with kidney diseaseSmith,29Smith M. Weaving the sweetgrass and porcupine quill birch box into a methodology: the living stories of chronic kidney disease for First Nations People.https://dspace.library.uvic.ca/handle/1828/9308Date accessed: July 13, 2021Google Scholar 2018 (thesis)Canada10Ojibwe and Potawatomi23143:720–65Quill box methodSharing circlesQuill box/living storiesLiving stories of CKDCKD, chronic kidney disease; DKD, diabetic kidney disease; F, female; M, male; NS, not specified; Tx, transplant. Open table in a new tab CKD, chronic kidney disease; DKD, diabetic kidney disease; F, female; M, male; NS, not specified; Tx, transplant. We identified 5 themes: disadvantaged by insufficient health knowledge; discrimination in and apprehension of the health care system; fear of social disconnection; relying on relatives and kinship; and confronting barriers to transplantation. Subthemes are described in the following section, with selected quotations from the primary studies illustrating each theme provided in Supplementary Table S3. A thematic schema to illustrate the conceptual links among themes is shown in Figure 2. Some patients perceived factors beyond their control, like stress, chemicals, or sorcery, contributed to their CKD.18Bennett E. Manderson L. Kelly B. Hardie I. Cultural factors in dialysis and renal transplantation among Aborigines and Torres Strait Islanders in North Queensland.Aust J Public Health. 1995; 19: 610-615Crossref PubMed Scopus (23) Google Scholar Some experienced resentment about their delayed diagnosis and were angry their lack of understanding disempowered managing their health. For instance, one participant stated, "why hasn't someone in the medical profession told me [about kidney disease],"27Walker R.C. Walker S. Morton R.L. et al.Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study.BMJ Open. 2017; 7e013829Crossref Scopus (36) Google Scholar and another said, "Nobody took the time to explain … what kidney failure is … and the seriousness of it."23Richels L. Sutherland W. Prettyshield K. et al.Community-based dialysis in Saskatchewan First Nations: a grassroots approach to gaining insight and perspective from First Nations patients with chronic kidney disease.Can J Kidney Health Dis. 2020; 72054358120914689https://doi.org/10.1177/2054358120914689Crossref PubMed Scopus (6) Google Scholar Some regretted not accessing preventive health information that could have reduced their likelihood of getting CKD, saying, "You don't know what the hell got you here, if you did, you would have probably done something about it."28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar The insidious nature of CKD gave others a false sense of security, contributing to their inaction. On reflection, they regretted delaying acceptance of their CKD and not heeding health advice on how to slow its progression. For example, one participant said, "I didn't listen. I was like, I don't feel sick."28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar Another reminisced, "[I] miss how I used to feel, I used to feel real good."28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar Following a therapeutic diet presented many challenges for Indigenous patients. Some juggled conflicting advice for multiple health conditions, for example, "all the things I was told to eat with my diabetes, well, I can't eat those things for my renal diet."25Schiff R. Freill H. Hardy C.N. Understanding barriers to implementing and managing therapeutic diets for people living with chronic kidney disease in remote Indigenous communities.Curr Dev Nutr. 2020; 5: nzaa175Crossref PubMed Scopus (2) Google Scholar Others battled to integrate unfamiliar foods, for example, "I was trying to figure out what the heck it is. It's not normal food that we usually eat."25Schiff R. Freill H. Hardy C.N. Understanding barriers to implementing and managing therapeutic diets for people living with chronic kidney disease in remote Indigenous communities.Curr Dev Nutr. 2020; 5: nzaa175Crossref PubMed Scopus (2) Google Scholar Many were overwhelmed by all the information to absorb and the need to "retrain your whole way of thinking."28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar Often information was given in an inaccessible form; for instance, one participant said, "they just give me pamphlets from the hospital but I can't read that good, so I don't bother with them."23Richels L. Sutherland W. Prettyshield K. et al.Community-based dialysis in Saskatchewan First Nations: a grassroots approach to gaining insight and perspective from First Nations patients with chronic kidney disease.Can J Kidney Health Dis. 2020; 72054358120914689https://doi.org/10.1177/2054358120914689Crossref PubMed Scopus (6) Google Scholar Understandably, the burden of following treatment plans led some to lose hope; one participant said, "you told me yourself that there is no cure."28DeGroot T.M. Living with renal disease: the Native American experience.https://www.proquest.com/openview/8c605728d8809144931159f00a570b72/1?pq-origsite=gscholar&cbl=18750&diss=yDate accessed: July 13, 2021Google Scholar Some patients delayed accessing health care because of traumatic memories of past injustices resulting from government policies. One Australian patient recalled his/her parents "feared for my safety"24Rix E.F. Barclay L. Stirling J. et al.The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.Hemodial Int Int Symp Home Hemodial. 2015; 19: 80-89Crossref PubMed Scopus (24) Google Scholar when visiting his/her local hospital, due to decades of systemic abduction of Indigenous children. Another patient described being born in a mortuary; his mother was not allowed to "birth in the maternity ward with all them White mothers."24Rix E.F. Barclay L. Stirling J. et al.The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.Hemodial Int Int Symp Home Hemodial. 2015; 19: 80-89Crossref PubMed Scopus (24) Google Scholar Many Indigenous patients were reluctant to seek medical care after witnessing a lack of empathy and respect. One spoke of her own negative experience, declaring "you're making me depressed. You don't know what that's doing to my brain."20Hughes J.T. Freeman N. Beaton B. et al.My experiences with kidney care: a qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.PLoS One. 2019; 14e0225722Crossref Scopus (13) Google Scholar Patients were frustrated by clinicians not acknowledging or understanding Indigenous ways. One patient explained, "Many First Nations cultures show respect to authority by not making eye contact … [and] will sit quietly and not ask for anything."23Richels L. Sutherland W. Prettyshield K. et al.Community-based dialysis in Saskatchewan First Nations: a grassroots approach to gaining insight and perspective from First Nations patients with chronic kidney disease.Can J Kidney Health Dis. 2020; 72054358120914689https://doi.org/10.1177/2054358120914689Crossref PubMed Scopus (6) Google Scholar Another patient described being "told off"27Walker R.C. Walker S. Morton R.L. et al.Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study.BMJ Open. 2017; 7e013829Crossref Scopus (36) Google Scholar by his/her clinician for failing to take medication, without attempting to understand the barriers he/she was encountering. Some felt disempowered by the health professionals, describing them as controlling and authoritarian, and this led them to disengage from treatment. Another said, "they should be more sensitive about who they're talking to and how they do it."24Rix E.F. Barclay L. Stirling J. et al.The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study.Hemodial Int Int Symp Home Hemodial. 2015; 19: 80-89Crossref PubMed Scopus (24) Google Scholar Frustration was expressed by one patient over lack of continuity of care, "You just get to know them and then the next minute they're gone … the new ones don't really know you or anything,"20Hughes J.T. Freeman N. Beaton B. et al.My experiences with kidney care: a qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.PLoS One. 2019; 14e0225722Crossref Scopus (13) Google Scholar leaving little opportunity to build rapport or trust. Language barriers faced by Indigenous Peoples presented a significant challenge. Many patients in regional and remote areas are fluent in their community language, with diverse comprehension of English. Some patients thought clinicians used complicated medical terms, saying, "It was really vague, your creatinine or something is really high … but no explanation."27Walker R.C. Walker S. Morton R.L. et al.Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study.BMJ Open. 2017; 7e013829Crossref Scopus (36) Google Scholar They wished clinicians would "… talk proper so we can understand,"20Hughes J.T. Freeman N. Beaton B. et al.My experiences with kidney care: a qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation.PLoS One. 2019; 14e0225722Crossref Scopus (13) Google Scholar enabling them to comprehend instructions. One study showed how fluid restriction requirements were misinterpreted. The patient said she had a "little bit of water tea … [that's it]"19Cass A. Lowell A. Christie M. et al.Sharing the true stories: improving communication between Aboriginal patients and healthcare workers.Med J Aust. 2002; 176: 466-470Crossref PubMed Scopus (220) Google Scholar but did not understand the restrictions were for all types of drinks. Several participants experienced fear and sadness that treatments may require them to relocate, having major consequences for their family responsibilities. For example, one participant said, "If I did have to move into town … I couldn't help them with the kids,"27Walker R.C. Walker S. Morton R.L. et al.Māori patients' experiences and perspectives of chronic kidney disease: a New Zealand qualitative interview study.BMJ Open. 2017; 7e013829Crossref Scopus (36) Google Scholar and another participant stated, "my family depends on me."18Bennett E. Manderson L. Kelly B. Hardie I. Cultural factors in dialysis and renal transplantation among Aborigines and Torres Strait Islanders in North Queensland.Aust J Public Health. 1995; 19: 610-615Crossref PubMed Scopus (23) Google Scholar These responsibilities made treatment decisions difficult as they were often torn between 2 impossible options. Others worried the chronic nature of their illness forced family roles to be restructured, making them dependent and causing feelings of